One Year of Pulsatile Tinnitus

[SaraJayne]

Morning folks. I've been reading here for a while but haven't seen any posts that I 100% identify with. As I approach my one year PT anniversary in a couple of weeks, I thought I'd just see if there's anyone out there whose experience is very similar, since I'm at a point of trying to decide whether to continue looking for answers or not.

I got PT last year when I was abroad on holiday. Woke early in the morning, got out of bed, went sideways across the room thinking I was going straight on. No alcohol or meds had been consumed. Laid back down and heard this wooshing sound. My balance was OK when I got up again, but the wooshing persisted.

Since then I have episodes of giddiness sometimes when I reverse my car and occasionally at other times, which sounds normal, but I didn't get this before. I have constant PT in left ear, which I can hear whenever it's quiet. I have problems sleeping anyway, and whilst PT doesn't wake me, it doesn't help me getting back to sleep.

6 months in, it was getting more bothersome, so I got a referral. Consultant did:
Hearing test - fine
MRI scan - fine

He could see white spots consistent with migraine (I have occasional migraine aura without headache) but nothing of concern.

He is confident that all serious problems are ruled out and I need no more investigation unless it's becoming too difficult to live with. The next step, he says, is to see a specialist regarding possible superior semi circular canal dihiscence, however having looked at the symptoms, I think I'd be having more problems if it was that. I'm very sensitive to noise, but this has been since before the PT started, and I don't hear any other internal body sounds.

My dad also has tinnitus - PT and
classic - and my uncle (his brother) has had PT all his life. I'm wondering if anyone else has a family history of PT and are there any known likely hereditary causes?

It hasn't got any worse in past 6 months so I'm trying to just accept it, but considering going back to the specialist as it does bother me, especially at night. I've got pillow speakers, but just find them distracting.

Any thoughts appreciated.

Sara

 

[Karen]

Hi, @SaraJayne

I can relate to your situation, as I have PT, too. I've had it, along with regular tinnitus, for six years now. At first, I went to various doctors and specialists in desperation, trying to find a cause and hoping for a solution. However, after going to several doctors, including three neurotologists, I had a number of tests without anything being resolved. The next test I would have had to undergo was more invasive, and I didn't want to add more radiation to my body than I had already.

So, for now, I have been living with it. My rule of thumb is that, as long as it doesn't get any worse and I don't have any new symptoms, I can live with it. It's not always easy, and some days are better than others, but that's what I'm doing for right now. And, for me at least, it has seemed to get a little easier with time. I am basically trying to ignore my PT and T, and just getting on with life. This may not be the perfect solution in every case, but it is in mine.

On Whooshers.com, it is suggested that PT is usually curable if a cause can be found, and many people do continue to go from doctor to doctor, and from test to test. However, I have opted not to do that.

I do think it is possible that this condition is hereditary. I have a thyroid condition, too, and that may be a contributing factor.

Please weigh your decision carefully, based on what your doctor has told you. If you have ruled out any life-threatening conditions, and your symptoms have not increased or changed, you could consider taking a break from searching for answers. Then, if things change, you can resume the search at a later date.

I'll be interested to hear what others' comments are, and what you ultimately decide to do.

Best wishes,
Karen

 

[James]

Hi @SaraJayne

Nice to read your post. Answers or not, good to read others experiences. I have PT too. The best thing my doctor(s) did for me was medication to aid sleeping, and the T issue. Since then I switched prescriptions. I believe my Father also had T. Time and Doctors have helped me. I hope you find something that helps you.

 

[SaraJayne]

Hi Karen and James. Thanks for your replies. Sorry it's taken me a while to respond; I've just got back from holiday.

I've given the searching a break since February and most of the time I can just live with it but there are always occasions when I think 'if only I could get rid of this noise'. I'm not sure if I have actual hyperacusis or if I'm just very intollerant of the slightest noise, but I find sounds which I'm not engaged with incresibly distracting and even distressing sometimes. I'm kind of greiving for silence. There's also this nagging feeling that I should have the test for superior semicircular canal dehiscence because that's the next step according to the consultant, but even if that's the answer, the surgery is apparently invasive and potentially may not help or may have side effects. What's the point of knowing if I'm not going to do anything with that knowledge? And if it's not that, then what? Maybe this is a psychologial battle more than a physical. I need to find a way to make peace with it.

I do use sleeping pills from time to time, but I find it hard to get up, I have what I call a sleeping pill hangover.

Interestingly, I came down with a rotten cold at the end of last week and flew home with it last night. My left (PT) ear was really painful, much more than ususal and my PT was especially noticable afterwards. The usual slight fullness was very much exagerated and the only thing that helped was leaning my ear down to my shoulder. This also makes the PT quieter. I have no idea if this is specific to having a cold. I'll have to try it again when I'm better to see if it still eases it. If it does I'll be weeks googling to see if it's signifcant, my latest clue in the quest for answers!

Thanks again. No one seems to understand it (even my dad says it doesn't bother him, he doesn't notice it much) so it's good to be able to share experiences with people who know what it's like.

 

[Karen]

Hi, @SaraJayne,

I'm so sorry you've come down with a cold, and that could definitely affect the feeling of fullness. I tried leaning my PT ear down toward my shoulder, but it didn't change mine at all. So --- maybe that is a clue that yours has a different cause.

It does sound like you could have hyperacusis, based on what you've said. That may subside in time; when my T and PT first came on/got worse, I remember being very sensitive to noises, but I am not experiencing that now. So, take heart -- that may improve with time.

What test did your doctor recommend for superior canal dehiscence? If it isn't too invasive, maybe it's still worth considering, at some point. I'll be interested to hear what you ultimately decide to do.

Take care, and I hope you feel better soon!

Best wishes,
Karen

 

[John Taylor]

Hi Sarajayne

I have both PT and T ... PT seems to be central, and T is right hand side ear.

I also have trouble getting any useful help / info out of GP's / ENT specialists.

My theory is that it's a thyroid related problem, as it runs in my family.

My hearing is very sensitive, and I come through hearing tests with flying colours every time. MRI's supposedly shown nothing of any concern.

I feel like blowing my brains out sometime .... I just wish people would take it seriously for once.

 

[Karen]

Hi, @John Taylor,

Have you had both the tinnitus and the pulsatile tinnitus since 2012, or did the pulsating start later? I had tinnitus for many years (fairly mild) before my increased T and PT started. Mine started after taking a blood pressure drug, but I feel that my ear was already sensitive, due to the tinnitus in that ear. I have a thyroid condition, too, and I think that may predispose us to tinnitus problems, in many cases.

Just curious: What kinds of tests, if any, did your doctors order? How many doctors have you been to, and have you given up, and are just living with it now?

Take care; I can totally sympathize with your frustration with doctors!!

Best wishes,
Karen

 

[John Taylor]

It sounds like there are some very common possible causes / links on these forums.

Blood pressure meds ... propanalol

Thyroid issues ....

Cervical spine damage ...

Post surgical issues / trauma

All very hard to pin down, and therefore the Drs can't be bothered to do anything.

 

[Karen]

That may be true, John. And the doctors who do know something about pulsatile tinnitus and try to help people are totally inundated with requests. There are two doctors here in the U.S. that so many patients have sent their scans to for evaluation that it takes many weeks before getting a response.